Dinner -
5oz of whole milk
2.5oz of stage 2 puree
Self-fed and spit out several pieces of solid diced macaroni & cheese without freaking out

Not too shabby. Why is this so remarkable? Because all of the afternoon food was consumed in under 30minutes and was feed to the boys by their therapists with no involvement from me or Granny Cathy. For the first time ever the boys HAPPILY let someone other than us and the feeding clinic staff feed them and consumed their full meal plus extra all on their own direction. As my good friends Trish & Becky would say, it's been kind of a hollow leg day.

Sunday, October 17, 2010

At my last post I was talking about what a nightmare the first dose of Periactin was. Well... heh, heh, heh... Yeah, that was just the tip of the iceberg.

So the next day, Thursday, the boys ate considerably more food that usual and they were slightly better behaved but very tired. Then that night immediately after bathtime Evan threw up twice on an empty stomach with no warning and not caused by any gag trigger and spiked a fever of 102. He threw up all night long and then was lethargic all Friday. By Saturday we went into the pediatrician because we found white sores on the inside of his bottom lip. Turns out they were on the back of his throat too and that it was a virus likely similar to that of Hand Food and Mouth. The pediatrician said that if Cameron was not exhibiting signs then he should be okay to continue his normal activities which was great. Cameron, meanwhile, had been eating more and more and more food. He wasn't able to go more than an hour or two without asking for food and telling me he was hungry or thirsty. Sunday night Cameron ate almost a half of a hot dog, 12 goldfish crackers, and 3oz of a lumpy stage 3 puree, but he spiked a fever at dinner and we knew that he'd had it too. Vomit everywhere, all night long, and obviously we had to discontinue giving the Periactin because the sores in their mouths hurt so badly they wouldn't even drink more than a sip of water. And then by Monday my husband had it too. Everyone seems to have recovered for the most part by this weekend but we're all still quite tired.

We started back up on the Periactin and the toddler tantrum that came with our first dose the week before happened again, but now I was prepared for it. The volume and desire to eat is not what it could be because they are still getting back in the grove but by tonight they are eating better, just not fantastic. Oh, and Evan stopped vomiting on Tuesday, Cameron stopped vomiting on Wednesday, but our five day streak of no vomit ended tonight with a puke at dinner and then again during the evening bolus from Evan. *sigh* It was soooo very nice while it lasted.

To try and shake the blues we had from this illness we decided to visit Homestead Gardens for their fall festival. It was great because it's so beautiful there and there's lots to see and do, and we got there early enough that there was almost no customers yet. The trip was cut very abruptly when Evan tripped stepping up onto a platform to play with one of those coin operated toddler amusement rides, you know, the kind just like outside the grocery store that they sit in and you put in a quarter and the thing rocks and makes car or choo-choo noises. He tripped forward and smacked his forehead right on a corner of the base of one of the rides. His head started gushing lots of blood from the half inch slice. We left and took him to urgent care because it was clear that the gushing vertical slit was not going to stay closed enough to heal on its own without sutures. My poor brave boy ended up with two stitches (actually the nurse put in three but had to take one out) and some surgical glue to keep it shut tight. He was very brave and was acting just fine while we waited for the trauma nurses to get around to treating his cut, but was obviously hysterically upset when they did the sutures. Now everyone will be able to tell the boys apart for the rest of their lives.

Evan ran through the maze one more time before making a bee line back to the yellow race car ride, which is where he tripped on the platform and got this nasty gash.

Believe it or not, he was actually in a pretty okay mood in the urgent care center and slept 20minutes in my arms while waiting for his stitches and then was up until 7pm! The next day was business as usual...

Wednesday, October 06, 2010

Great night last night, no puke and no one woke up in the middle of the night. This morning the boys slept in until 7am (angels singing from the heavens) and were in fantastic moods. That is until I gave the boys the first dose of their Periactin. Holy hell was that a miserable morning. It took about an hour before the full effect of the medication presented itself. I was expecting sleepy kiddos, maybe a little cranky and whiney, even clingy. Hopefully a little hungry too. What we got were two tornadoes of misery and angst. Nothing made them happy, they trashed the playroom. They were much, MUCH more agressive with each other, became hysterical if one was being held but no the other. Refused to share my lap (not unusual) but instead of the usual protest and dirty looks at me there were complete meltdowns and fighting. And they pushed and shoved each other, something they never do, and threw things across the room with anger and all around threw the most humongous joint temper tantrum I have ever seen.

I bailed on the idea of going to story time because it was clear that this would be a huge mistake. So my mother and I decided we'd talk a walk around the neighborhood with the boys in their wagon. Cameron threw a furious fit because I put Evan's shoes on first, while Evan was furious that I put shoes on him at all. And once I had Cameron in my lap to put his shoes on he became a madman because I was putting the right shoe on the right foot, and he wanted the left shoe on the right foot. The whole 20 minute ride/walk around the neighborhood was completed with sullen and sour faced toddlers sitting in stony silence the whole time, you'd swear they'd just had a screaming match but were now refusing to talk to each other or me or their Granny.

They did NOT eat well at all during breakfast and lunch. They are NOT drinking fluids well either. Now they are napping but Cameron keeps waking up at the slightest noise and screams bloody murder for a few minutes until he finally settles down and goes back to sleep. It's been a very ugly day. I think tomorrow I will cut the dose in half before giving it to them.

Tuesday, October 05, 2010

We had yet another follow up with our regular GI (the one from U of MD and not affiliated with Mt. Washington Pediatric Hospital Feeding Day Program) today to make sure that our very slow weaning of formula is not impacting the boys negatively. We have been giving the boys only 500mls of formula per day, down from the approximately 700mls they used to get. The decrease in formula through the pump is in hopes that they will be hungrier and want to eat and drink more by mouth. This seems to have worked because up until a week and a half ago we saw some great consistency and improvement in the volume of foods and drinks they consumed by mouth. The boys were regularly consuming about 3 to 4 ounces of purees and 5oz of milk or juice or water per meal.

But then about a week and a half ago it all tanked back down to fighting to get two ounces of puree and three of milk each meal. They both started puking at night again, even puking three times in a row at the same time on Thursday night. Good times.

The GI was expecting at this appointment to see that the boys would have lost some weight in the last 4 weeks but they actually have gained a little bit with Evan weighing 26lbs and Cameron weighing 29lbs. This is good news because she feels that they boys need a little help with eating and we don't want to take away calories from their formula unless they're gaining tons of weight, which they are not. To do this she's prescribing a medicine called Periactin (also called Cyproheptadine in the generic form). Periactin is actually an antihistamine that when given in small doses has for our purposes a convenient side effect of causing hunger. So it is another drug like Erythromaicine which is an antibiotic the boys were on that given in small doses increases stomach motility/digestion, this Periactin makes you want to eat.

There are side effects to this medication, but nothing really scary. The most common problem with this medication is that over time the body begins to tolerate the small doses and suddenly without warning the medication stops having its desired effect. So for this reason we will start giving the medicine two times a day for 4 weeks and then stop giving it for one week. If this is too long a time frame and we see their appetite begin to wane again then another option is to give it five days a week (Mon - Fri) and none two days a week (Sat and Sun). Also, this medication is an anti-histamine so the next issue is that it makes you very sleepy. If this happens and it causes issues during the day/morning hours then we just drop the morning dosage or give it right before nap time (hallelujah!). This is a side effect that a very sleep deprived Mommy and Daddy will like. Lastly, and by far the most severe but also the most rare side effect, this medication has the tendency to decrease urine output. Luckily the solution is to stop giving the Periactin and the problem stops within 24hrs.

We'll be starting the Periactin tomorrow morning. I hope this is the trick to get us to the next stage of eating. I'm just as excited to try this medication if it means more uninterrupted sleep at night for all of us, as well as increased interest in eating by the boys.

If you or your little one has been on Periactin, what was your experience like?

Cameron & Evan turn 0!

About Me

I'm a stay at home mom of surprise fraternal (we think) twin boys Cameron and Evan. They were born at 28 weeks 6 days due to Intra-uterine Growth Restriction (IUGR). We have struggled with global delays from prematurity, failure to thrive, feeding tubes, and re-learning to eat food by mouth. We're finally on the other side of the fence from our prematurity experience and I hope that something I write of our adventures in my online diary helps someone else struggling with similar experiences.